Stage 3c1 cervical cancer

Hi Moonlightarcher and welcome to our group.

I’m the community champion in this group which just means I’m a volunteer for Macmillan and help out around the community,  and I’m glad you’ve come to join us. I hope you’ll find it a helpful and supportive environment to be in.

We are all at different stages of treatment and recovery, but  I’ll start things off by sharing my story. I’m sure others will come along and join in. You’re right-it’s good to talk with people who understand.

I was diagnosed stage 2b back in September 2018, and was invited to take part in the Interlace trial-chemo followed by chemoradiation, but I really didn’t have anything explained to me about the trial and turned it down. I went straight to chemoradiation, and had 32 sessions of radiotherapy and 4 sessions of Cisplatin chemotherapy. 

I wasn’t able to have brachytherapy as I suffered a pulmonary embolism the night before admission for it, so I had an extra boost of radiotherapy-hence having 32 sessions instead of the planned 25.  I finished my treatment on Christmas Eve 2018, and then had an mri scan 3 months later which gave me a NED result (no evidence of disease).

Unfortunately 9 months after my treatment ended, my cancer was back in the same place with a very small tumour. I had more scans and my consultant booked me for a salvage hysterectomy which was attempted in January 2020. When I was opened up, it was seen that I had very bad damage from all the radiotherapy and it wasn’t safe to proceed so I was stapled up and sent home.

More scans followed, and in March 2020 I underwent a total pelvic exenteration, where everything in the pelvis is removed-reproductive system, bladder and bowel so now I have two permanent stomas. 

My story is quite unusual really and we don’t very often find women in the group who have had the same experience as me, so please don’t let it alarm you! We do however have ladies at stage 3c who are successfully through treatment with no recurrence and I hope you’ll hear from them soon. Other ladies at stage 3 have recently completed treatment so we’ve got lots of different types of experiences here we can share,

I hope your chemo has been going smoothly for you-it won’t be long until you’re finished with that and start the next phase of treatment. Please feel free to ask any questions, and use the group as a safe place to discuss any fears and worries. We have lots of positive stories too! The main thing is that I hope you won’t feel alone going through all of this-it’s tough, but you can get through and we can all empathise with how you feel. We are here to do our best to help support you through.

Sarah xx

Hi Moonlightarcher 

I was diagnosed with Cervical cancer 3C1 and underwent chemo and radiotherapy for 5 weeks. I then had brachytherapy for three days. When I was diagnosed it was a shock and the first thing I thought was ‘that’s it I’m going to die’ . I had just lost my husband and my mum a couple of years earlier and I was still grieving for them. Everyone around me said ‘you will be alright , you will fight this, if you need anything we will be there’ 

the reality was quite different for me as even though I had my grown up children there every step of the way I still felt very very alone.

the hardest thing for me was seeing so many other people having treatment too for some many different forms of cancer yet I found comfort in my little chats while I was drinking the dreaded cups of water before my session in the waiting room . Those chats with people and that sense of support and caring really kept me strong.

The treatment is tough and it takes a lot of your strength, I would be strong Monday to Friday but Saturday morning I really fell apart as I was so tired and felt weak and sick sometimes. 
Sundays were my good days where I felt ok(no idea if it was in my head or not)

When I finished my brachy I cried with relief and my radiographer cried with me . 
I am now in remission and everything crossed it stays that way , I still think about it of course but am so grateful I got through it.
Please know that I am thinking about you and sending strength for you on your journey - you really are not on your own but I know you will feel like it sometimes.

 
Please take strength from those around you and talk to your consultant when you need to as they really do help .

Sending you my love and best wishes x

1. Thankyou DebbieB2 for your reply, I have read it many times and have got much strength and comfort from your words. Iam ready for the next part of my journey although alittle scared, chemoradiotherapy on the 20.1.25. Iam being positive just feel christmas is a funny time of year and brings many emotions. This year has been a very different christmas as feeling unwell from the chemotherapy,  I too have grown up children so at times can feel like you are on your own as they are busy with their lives. Can I just ask, I have been told my tumor is the size of a grapefruit and my lymph nodes the size of a walnut and a cherry, I make jokes about this but secretly I'm very worried as this sounds very large, have you heard about tumor sizes?, are these a common size? Thankyou x

Hi SarahH21 thankyou for your reply, sorry it's abit late just feel christmas is a funny time of year and brings up many emotions. Iam positive and now ready for my chemoradiotherapy with starts on the 20.1.25 although alittle scared. I shall be talking more on here as I feel it really gives me support which I know I will need, just never used forums before so this is all new to me xx

Hi again Moonlightarcher 

No worries at all, please just come here whenever you want to. I’m not a fan of this time of year and can’t wait for everything to get back to normal!

I hope you’ll find the treatment manageable-perhaps you’ll find a real difference with the Cisplatin chemo compared with the chemo you’ve already been through. I found it much easier than radiotherapy.

If you’ve got any questions going through the treatment we’ll be happy to help in the group, and I’d recommended mentioning any type of side effects (if you get them) to your team. They will be keen to help you so you’re feeling as good as you can be. 

All the best for getting started, and try to keep that positive attitude when you can! 

Sarah xx

Hi Moonlightarcher

Yes I agree Christmas is a really emotional time . I was diagnosed at Christmas so completely understand how you are feeling. I’m not really sure about sizing of tumours , I know mine was quite big because I was very swollen. The original gynae doctor I saw in A&E said I was very enlarged … sorry I’m not much help there . Once I had my treatment plan and met my oncology team they were really positive that the treatment would be successful so I took some positivity and strength from that . 
I think the thought of the treatment was far worse than actually having it . Mostly I got a bit tired and round my last week that was when I needed a bit of support with driving me to the hospital as I’d managed driving myself up to then. I made sure I rested when I could and did absolutely nothing most weekends so I could keep my strength up ready for the following week. 
I had a bit of an upset tummy and felt queasy but they really help with the tablets and changing them up to combat any side effects . 
I will be thinking about you when you start your treatment , and am always here to listen if you need any support at all xx Everyone’s journey is their own and I know it can feel isolating - think about yourself and concentrate on you - take care and keep in touch if you feel you need anything x